well now i am stumped.
my episodes are continuing each day without fail.
i will try to explain exactly what happens:
* first i feel some sort of warning like sometimes i feel sick to my stomach or i feel painful zaps in my head or i see flashing lights in the periphery. i always feel disoriented before one comes.
* i feel some sort of surge in my head and this surge travels to my right side.
* my leg (primarily)and arm will shoot out, elongate as far as they can go, and then retract and shudder.
* this cycle of elongation and retraction will go on for 15-20 minutes.
* afterwards i feel some aftershocks (facial and head twitching) and i feel very tired. my muscles on the right side get such a work out that they ache and are stiff the next day.
* there really is no patten to them that i can discern. when they happen, i am not stressed. sometimes i have just eaten previously but not all the time. sometimes they happen indoors and sometimes outdoors. heat doesn't seem to be a factor.
more notes: i don't have any pain. i don't have headaches. i have the zaps in my head which are very painful but they only last a few seconds each.
this is the big thing here that happened yesterday.
yesterday i felt very good physically. i was outside at a park with my son. it was hot and humid. i had no MS symptoms and i didn't experience this symptom either. i thought...good things are getting better.
but then last night...in the middle of a deep sleep...i startled awake as the convulsions were happening. so now they are happening during sleep.
i don't know what this is but...i want to be very clear and factual with the doctor if i ever do get to see an actual doctor!
i feel disgusted and helpless. i see a nurse on monday at the neurologist's office. i do not have high hopes.
Come sit a spell and shoot the breeze. Sweeten the day with a little synchronicity...
13 comments:
Dear Body: Heal
Dear Body: Work for me
Dear Body: Cooperate
All this we ask in Jesus name!
I often learned that some of my symptoms are delayed after going through heat, over-doing myself and etc.
I can feel your frustrations because I have been there.
Hugs, Jim
Sending you big hugs and chicken soup.
dang, that's scary!
definitely a nerve-related happening
hope the neurologist can pinpoint the prob and offer a solution if not an outright fix....
Wow Merelyme that has to be disconcerting to say the least. I hope they can figure out what is up.
i've been catching up on some of your past posts here..
man, it's awful to feel to helpless in the face of these symptoms. i know you don't have high hopes for monday..
but just maybe, just maybe the nurse will have some answers.
Merelyme,
When symptoms that you have not experience before suddenly go on for several days it is usually an exacerbation and the only help MS’ers receive to get an exacerbation under control is a Solu Medrol Infusion or Medrol Dospak, both are steroids.
MS is so frustrating, especially when you feel physically fine, then out of nowhere you body go haywire. Heat is definitely a culprit that causes MS'ers body to go haywire. I hope you get some answers and relief soon.
I have migraines and the head symptoms you describe are right in line with what I experience. Not so for the rest of the body ... still your symptoms seem very neurological. You remain in my thoughts as you seek the help that will bring these symptoms under control.
Really I know nothing but I think Blinders might be right... This may be an exacerbation and steroids may be in order. I hope you get anwers and treatment ASAP. I seem to be a bit out of sorts myself but I'm still in wait and see mode.
You are going to see a nurse on Monday. Is he/she affiliated with your Neuro? If so, I would make sure your position and dissatisfaction is known in how you are NOT being treated and returned phone calls. Tell the nurse to carry your complaint to the doc and that if you do not get a call within 24 hours, you will be shopping for a new doc. If the nurse is not affliated with your Neuro, ask for a Neuro reference...and GO.
You said: "my leg (primarily)and arm will shoot out, elongate as far as they can go, and then retract and shudder." This is known as Restless Leg Syndrome and can go on for as long as an hour in arms and/or legs. I get it in both. I take Requip for it and it is a miracle drug to me. Works like a charm.
Regarding flashes in peripheral eye area - if possible,try getting some shut eye during the day (even if you don't sleep) and it will give your eyes (and BRAIN) some rest from outside influences.
EEG: It is not unusual for an EEG to NOT show stuff. MRI is a better diagnostic tool.
What you are referring to as "seizures" - are they really "brain seizures" or seizures of a body part (arms, legs, neck, jaw, face, etc.)?
If a Medrol Dospak (pills taken over a 6 day term) does not resolve your spasms/seizures, it is time to find a neuro who can spend the time needed to give you a thorough exam. Dospak can be ordered by family doc or physician assistant - doesn't have to a neuro. But get the Requip (0.50mg) and you will find relief in the arms/legs spasms.
Please let us know how you are doing,
Anne
I read your posts..here and way way down. You are in my prayers..I promise..I will be thinking of you as I mediate later tonight...
all my love across the seas to you..
Merelyme
I am experiencing something similar during the night, although not nearly as intense as you. I agree with Anne,a rest during the day is beneficial. I cover my eyes to completely block out the light for 20-30 minutes,and find it helps.
Best Wishes
Carole
Thank you for sharing your symptoms; MS has been one thing for over 20 yrs doctors have suspected per my CFS, and the one thing they haven't been told by me was the flashing lights (like shooting stars) always on my right eye vision. More recently one of my legs has been periodly unable to move. Of course Ive been hesitate to start more tests!
I hope things go well with the appointment
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